(Written for SAWNET,
http://sawnet.org/books/reviews.php?Aids+Sutra)
Today there are approximately 3 million Indians living with HIV and AIDS, a number that masks the human faces behind a disease that has been reviled and misunderstood as the worst plague in human history. A disease often considered to afflict only those regarded as the dredges of society, AIDS has the potential both to expose the dark underbelly of society, and also to inspire triumphs of human compassion and perseverance.
AIDS Sutra, funded by the Gates Foundation, is a compilation of 16 vibrant essays about Indians living with HIV by some of South Asia’s most gifted authors, including Salman Rushdie, Vikram Seth, and Kiran Desai. Several of the essays are narrated directly from the authors’ home communities; others are the fruition of their travels to the vastly different regions of India.
Siddharth Deb’s poignant account, “The Lost Generation of Manipur,” brings him to a remote corner of India bereft of employment opportunities and constantly on edge due to communal violence. Uncontrolled injecting drug use in the region puts young people of working age especially at risk for HIV infection.
Salman Rushdie’s piece on the politics and culture of the hijra (intersexed and/or transgender) community is a concise account of a population that defies society´s common [mis]perceptions around gender and HIV risk. Rushdie interviews a transgender AIDS activist named Laxmi, who lives in a constant duality of gender- going as a man by day and living with her parents, and transforming into a woman at night and on the weekends. Her advocacy on behalf of this distinct community in India has helped to distinguish hijras as a third gender- with different needs and challenges than men who have sex with men.
Other stories included in the book examine the lives of truck drivers, sex workers, and devadasis, women traditionally given to god, and nowadays women who choose or are forced into sex work as a means of income generation. In Sunil Gangopadhyay’s essay, “Return to Sonagacchi,” the author returns home to Kolkata to compose a compelling account of the lives of sex workers in Sonagachhi, narrating both the deprivation they face and also their power as an organized movement fighting for their rights as sex workers to safety, health services, education for their children, freedom from police persecution, and dignity.
Bill and Melinda Gates give the anthology’s introduction, and its insightful forward is written by the Nobel Prize-winning economist and author of Development as Freedom, Amartya Sen. Sen revolutionized the traditional economic paradigm by asserting that development is not simply about increasing per capita income, but rather “a process of expanding the real freedoms that people enjoy.” His examination of the economic effects of AIDS in India is nuanced in its consideration of both the beneficial impact of Indian pharmaceuticals in producing affordable antiretroviral drugs for much of the world, and the irony that income disparity in India prevents the majority of Indians living with HIV from accessing treatment, quality medical facilities, shelter, employment opportunities, and community support.
Sen argues that stigma is the primary fuel of the epidemic in India, where widespread ignorance pervades about how HIV is—and is not—transmitted. Among young Indians just reaching working age, knowledge how HIV is spread is dismally low at 25% of the population according to UNAIDS (20% comprehensive knowledge among women and 36% among men). Because many Indians still believe that HIV can be transmitted through touch, sharing food, or through aerosol transmission, Indians living with HIV face discrimination in schools and workplaces, ostracization, rejection from their families, and in many cases, violence and even death.
India’s uncomfortable and often times paradoxical relationship with sex and sexuality is often at the root of ignorance and discrimination against HIV, with 87% of new infections in India occurring through unprotected sexual intercourse each year according to India’s National AIDS Control Organization. Despite an ancient culture rich in celebration of natural human sexuality, imperial-era taboos surrounding sex continue to create a stifling conservatism that limits access to scientific information about sexually transmitted infections, reproductive health, and the rights of women and sexual minorities.
In Amit Chaudhuri’s essay, “Healing,” he remarks that “The troubling ambiguity of sex through history— the fact that it bestows life and pleasure, and also, in a way that can’t be entirely explained by morality, confuses and shames— have converged in a new way upon this disease.” His interviews with Alka Desphpande, an AIDS researcher and physician in India’s first AIDS ward, reveal the challenges faced even by the medical community in becoming educated about HIV. Large numbers of Indian health care workers still believe that HIV is transmitted by touch, and widespread denial of treatment and discrimination against people living with HIV is common.
The first essay “Mister X Versus Hospital Y” by Nikita Lalwani tells the story of a Dr. Tokugha who is infected with HIV and becomes an important activist when his results are disclosed to his family (and bride-to-be’s family) before he himself is made aware of his status, just days before the wedding. His lawsuit against the hospital’s breach of his privacy sparked controversial debate and the release of his name in newspapers all across India. The court ruled against him, “decreeing that the hospital’s release of the information to the minister without his consent had ‘saved the life’ of Toku’s proposed fiancée. The essay forces us to consider the complexities behind forced disclosure of one’s HIV status. Not only was Dr. “Toku”’s right to self-disclose taken away from him, the judge tacked on a devastating addition to the ruling, that suspended the right of HIV positive people to marry. The laudable human rights organization, The Lawyers’ Collective, fought for years to restore this basic human right to people living with HIV, succeeding in 2002. Since then, Dr. Toku has become a prominent physician in the field, and goes above and beyond by arranging matches between people living with HIV.
Discrimination and national legislation intersect most brutally in India with the penal code provision 377 that makes homosexuality a criminal offense. Drafted in 1860 during British Rule, the anachronistic law fines and imprisons Indians caught in the act of sodomy and even oral sex for between ten years and a lifetime in jail. The law has served to drive homosexuality “underground” where men having unprotected sex with men cannot be reached for HIV awareness raising, sexual health services, STI screening, or recourse for police persecution and demanding of bribes.
One story included in the collection was strikingly disappointing— to the point of giving offense. Shobhaa De’s “When AIDS Came Home” reveals the author’s ignorant, discriminatory and classist lack of understanding of HIV and AIDS. Her account of how her driver becomes infected with HIV and gradually dies from AIDS is peppered with comments about her “repulsion” that he had spent so much time with her children, speculations about his involvement with sex workers and his sexuality, and self-congratulatory accolades when she provided occasional money for a doctor or medicine.
De’s piece examines her misconceptions about AIDS and vaguely suggests that she has seen the error in her was (perhaps simply because it would not be politically correct to admit otherwise), but still fails to include what lessons she has learned. Indeed, to conclude her story Shobhaa marvels that “Although they are such an intimate part of our lives, how little we really know about the people who work for us… it took Shankar’s death to see him as a human.” She concludes by lying to her children and telling them that the driver was infected through a blood transfusion because the reality that many men purchase sex is too shocking to bear.
By far the most thought-provoking inclusion in the anthology, Siddharth Dhanvant Shanghvi’s “Hello, Darling,” diverges from the book’s overall focus on more “marginalized” populations of sex workers, drug users and truckers, to recount the life experiences with HIV of an upper-class homosexual film director whose pseudonym is given as “Murad.” Openly flamboyant, driven to success, and yet still slow to “come out” about his homosexuality, and later, HIV status, Murad escapes the confines of Bombay and moves to New York City. He is unable to move in the local film circuit and returns to Bombay years later, where he eventually succumbs to AIDS.
Shanghvi’s piece is particularly well-researched and deeply-felt; his account considers early chronicles of the impact of AIDS on art and artists in Edmund White’s “Esthetics and Loss,” and the strange phenomenon of how AIDS “got noticed,” as explained in Urvashi Vaid’s “Virtual Equality,” in which she observes “how the passing of an entire generation from AIDS helped give rise to the modern idea of homosexuality: thousands of men had to die, in fact, to have to be seen as alive in the first place.” Shanghvi’s inclusion was particularly important and contrasted sharply with De’s story. “Hello, Darling” should serve as a wake-up call to elites believing in their infallibility, since the risk behaviors that propel the spread of HIV in India are by no means limited to lower socioeconomic echelons of society.
Overall, the anthology is an important, moving, and transformative read. Each story is relatively brief and gives a taste of the authors’ diverse and prolific literary talents. Some tales, such as De’s, are clearly geared toward upper class Indians who are beginning to understand the complexities of the AIDS epidemic in India. Still others delve into economic, political and human rights aspects of the disease. Till now, literature and artistic works on AIDS in India have been limited and relatively unknown. AIDS Sutra gives voice to communities and individuals that have been destroyed, silenced, affected and transformed by AIDS in a jarring and yet deeply meaningful manner.
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